The SACHD is one of several groups which fall under the umbrella of the Children’s Heart Federation. All of the money they raise in Scotland is spent on research projects, equipment for hospitals and homes and family support grants. They publish information leaflets, books magazines and newsletters as well as providing weekend breaks for young adult and teenage groups.
The aim of the British Heart Foundation is to play a leading role in the fight against heart disease so that it is no longer a major cause of disability and premature death.
The Cardiomyopathy Association is a charity that provides information and support to families affected by the heart muscle disease cardiomyopathy. This site has information on the main types of cardiomyopathy.
Contact a Family (CaF) are the only UK-wide charity providing advice, information and support to the parents of all disabled children.
The Down’s Heart Group is a UK charity which offers support and information relating to heart conditions associated with Down’s Syndrome. They also can provide specialised help to parents and professionals.
The Grown Up Congenital Heart Patients Association (GUCH) is a UK charity, founded in 1993 to provide information and support for young people and adults who were born with a heart condition, and their families. The Association is supported by the British Heart Foundation.
We provide information on congenital heart defects, in the form of fact sheets about children in hospital, their rights, medicines, pain, preparation for surgery, different disorders, education, exercise, feeding problems, etc.
Little Hearts Matter is the national voice for families where a single ventricle heart condition, such as Hypoplastic Left Heart Syndrome, Tricuspid Atresia, Double Inlet Ventricle or Pulmonary Atresia has been diagnosed. The charity works with medical and social care teams to offer a multi-disciplinary approach to the support and information needed by this group of people and their carers.
ECHO is an entirely voluntary organisation, run by parents for the families of children born with heart conditions who are treated at Guy’s Hospital in London.
The Family Fund helps families of disabled and seriously ill children under the age of 16. We give grants and information related to the care of the child. The range of grants includes holidays, leisure, laundry equipment, driving lessons and lots more. The range of information includes information sheets on subjects such as benefits, holidays and transport, and books such as Taking Care, After 16 – what’s new? and more.